Hi all. I’m new to this forum and wondered if anyone could shed any light on some very odd symptoms I’ve been having. About 5 months ago I developed some pains in the small joints of my right hand and right foot, these pains then migrated to the left side. This was followed by a non-blanching rash on each foot. This prompted me to pay my first visit to the doctors. The rash cleared up after a few days but since then things have really snowballed. Pains to wrists, elbows, shoulders and neck were accompanied by a feeling of weakness to my left arm and intermittent feelings of burning/pins and needles in limbs and random twitching in various parts of my body. These symptoms have at times been accompanied by a feeling of total exhaustion and a feeling of being close to tears when not feeling upset about anything. I’ve had several visits to the doctors since my initial trip and had numerous blood tests, all of which have been normal. For the last couple of months I have had a constant ache behind my left knee and to my left ankle and a feeling of altered sensation and awkwardness to my left foot. My left calf appears to be twitching almost constantly. I can’t always feel the twitches, they just appear as tiny ripples under the skin. 3 days ago I went for a relatively short walk and on return the toes on my left foot felt like they were on fire, a quite intense burning sensation which lasted all that evening. Along with these symptoms, for the last few months I’ve had a burning sensation to the left side of the tongue, saliva pooling in the base of my mouth, a feeling of mucus in the throat. Also my palate feels sore sometimes when talking and over the last few weeks I’ve started to slur certain words. I know this is a real mixed bag, but wondered if it sounded familiar to anyone? My GP has referred me to see a Rheumatologist (not sure this is the right route, but hopefully a start to getting some answers). Until then I am now feeling in limbo, can’t help but worry that the oral symptoms along with the fasciculation’s are a sign of bulbar onset ALS/MND. Many of the joint pains now only surface occasionally but the aches to the left leg, the twitches and the oral symptoms are almost constant, whilst that feeling of weakness to the left arm still surfaces regularly. Away from these symptoms I have a very happy and fulfilling life so it’s hard to imagine that anxiety could be the cause of any of this. Hope this makes sense to someone and thanks for reading.

I'm not an anxious guy, never have been. My worries started in August, in fact, in the middle of summer vacation. All I was doing was sleeping, eating, and playing Halo. One day, I had a headache. This headache would not go away. I looked up brain tumors. I started getting panic attacks. I had myoclonic jerks when going to sleep, because I was scared I wouldn't wake up. I developed perceived hemiparesis, I thought my peripheral vision was getting smaller. I felt like I had building pressure in my head. Eventually, all this became too much for me and I got a CT scan. It was clear. Then I got an MRI, it was also clear. Keep in mind, that before August, I had never EVER felt this way before. I don't have generalized anxiety disorder, I'm a former debater and have plenty of experience with speaking in front of crowds. I'd never had a panic attack before my first one this past August. So, what does this mean? It means that anxiety can strike completely out of the blue and that aches and pains are often psychogenic manifestations.

I then moved onto anxiety about ALS.... But that has mostly abated now and I'm well on the road to "recovery".

Firstly, addressing your various aches and pains. They can easily be symptoms of anxiety, and sensory symptoms are not a symptom of ALS. Tingling/hot and cold feelings/pins and needles do not happen as a result of ALS. Aches and pains do not happen in ALS except as a product of cramping or extreme muscle wasting causing joint dislocation or subluxation. Rashes do not happen in ALS.

Regarding your "feeling of weakness": you do not "feel" weak in ALS, you ARE weak. There is no associated feeling, you simply cannot do what you used to be able to do. If the weakness comes and goes, it's definitely not ALS.

Regarding the generalization of your symptoms, ALS does not spread that fast and will typically significantly weaken the area in which it starts before it moves onto other limbs.

A feeling of mucus in the throat is not an ALS symptom and does not indicate anything more than postnasal drip. If you are not having trouble swallowing, the increased saliva is almost certainly either because of GERD or anxiety and will go away once you treat one of those.

Weakness of the tongue in ALS is generally bilateral and never includes a burning sensation, although there is a benign and temporary condition called burning mouth syndrome which does include a burning sensation of the tongue, which can make it hard to talk.

Which words are you slurring? Do you notice a specific pattern? If you slur a word, are you able to go back and say the word correctly? Are other people noticing your slurring or is it just you?

Dear Andy, welcome on board.As a fellow twitcher bigguy said, pains, rush etc. has nothing to ALS ever. So you must assume you've got an infection (rush and joint pains are clearly realted to that), and what happens then is a rather common post-viral BFS-like reaction. Idea to check you for rheumathoid conditions seems to be correct because all symptomes point rather to it than to any other kind of disease, because autoimmune inflammations are also sometimes triggered by viral infection. People affected by viral infection might also have symptomes from CNS side as you describe - easy crying, and from autonomous system - fatigue, weakness etc.

Also Bigguy is right regarding the fact that anxiety often strikes as a bolt - because it might be more or less inherent -like in people with GAD, or it might be result of hidden stress (like it probably happened to mr. Bigguy himself, who was living a full and stressfull life of debater, as he says), then it just comes 'out of the blue'.Because you have a lot of unexplained and unpleasant symptomes, it makes you worry. Worried people often start to experience percieved speech issues, tiredness in fascial muscles as well as in any other, etc.Please consider that 1) your symptomes DO NOT MATCH ALS picture (which is characterised in vast majority of cases by SUDDEN clinical weakness in one limb, with quick progression from distal to proximal parts - from fingers to the whole hand, from foot drop to the whole leg immobility, etc., abut never with pains, cramps etc.) 2) you definitely had some viral infection, which is indicated by rush and joint pains, and BFS is often a post-viral condition, lasting for month and years 3) speech issues, swallowing issues and other throat and esophagus related tricks are one of the commonest sign of severe stress (which is your condition right now).

I wish you to be ruled out of rheumathoid conditions too (it is not ALS but also not a pleasant one) and gradually recover from your fears and pains.Read this site, you will find many stories of recovery and many tips how to get out of ALS fears.HugsYulia

Hi. Thank you so much for the quick replies. Glad to hear you're on the road to recovery bigguy. The slurred speech often seems to trouble me with the letter L, just could not say 'worldly' a few weeks ago, it's like I'm lisping. As for the aches and pains, the one behind my knee runs into my calf (the twitching one). Bit like a permanent pulled muscle. It often seems really bad as soon as I wake up whilst still in bed. Does that sound fitting with BFS? Thanks again for you're replies, really helpful. Best wishes to you both - Andy.

Yes and yes. I have a problem with slurring my speech and pulled muscle feeling. I think you noted it correctly, "a few weeks ago." These things wax and wane with bfs...but not with diseases such as als. You may notice one symptom one week, then another the next..that is very normal.

As for the leg, my right thigh feels really strained and pulled certain days. Sometimes it extends to my lower back. You will notice weird things happen to your body, and be left wondering how the heck it happened.

Don't be surprised if you get crampy, stiff, aches, pains, pins and needles, globus sensation, clumsy hand, limb jerks...the list goes on. All of this is normal bfs stuff, nothing to so with als.

You're in good company hereJay

You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho

Andy, slurring, especially only on a specific letter in a word like "worldly" should only be a concern if you are unable to go back and pronounce it correctly after mispronouncing it. If no matter how hard you try, you still can't pronounce it, perhaps this is cause for concern. But if this was truly the case, you would definitely be slurring on more than just that letter in that word.

Also, palpate the area in which you're feeling pain when you feel pain. Palpate it when you feel that the pain is at its worst. Does the area feel hard and contracted as in a cramp? If so, make sure that your leg is completely relaxed and feel it again. If it indeed is a cramp (and it certainly doesn't seem like one from what you're describing) and it is happening often, then go see your doctor. Otherwise, it's more than likely nothing to worry about.

Thanks for the replies everyone. 2 weeks to go now till I see the rheumatologist. Twitching and aching still continue but the most alarming symptom is still my tongue/mouth. Tongue has been continuously sore for over a week now, along with that I've found myself biting my tongue and cheeks at regular intervals. Does that sound like a symptom to something not sinister to anyone. Trying to stay positive but a constant pain in the mouth is hard to ignore. Thanks again.

Hi Andy,tongue/cheeks biting was discussed here many times and the answer is deinitely no. it is not a bad sign without any other notes made by neurologist. It happens when people are tensed so much (I do not think you are pretty relieved and relaxed in your waiting for rheumatologist and with all that twitching circus).

Thank you again. I'm just hoping I can get a diagnosis for these strange symptoms soon. Once I've got that I feel I'll be able to accept and cope with whatever it is. Another new symptom has been clashing my teeth together when talking several times a day. Feels like i'm going to chip them. Very strange. Big twitched in my right calf yesterday too, another new one. Oh well, time will tell.

Hi, I was just reading and was struck by how similar to my symptoms yours are. I wondered how you are doing now? My slurring is becoming more noticeable and the saliva and swallowing are also issues. I have had EMG's but do struggle to accept that it is not sinister especially when I feel the symptoms are not under control. My twitching I can cope with though the tongue twitches freak me out.

Hi EmmaLouSorry to hear about your symptoms. My oral symptoms still surface but they're not as persistent as they were. However the twitching is, it pops everywhere and is constant in my left calf. Also my left leg feels weak after minimal walking and I have a constant ache/pain behind my left knee. It's the first thing I notice when I get up. Sometimes nagging, sometimes almost unbearable. I've seen a rheumatologist, had more bloods taken and had an EMG since I was last on here. The only result I've had so far is that I am deficient in Vitamin D. Saw a neuro last week who was unsure, but they did at least witness my twitches and wants to follow me up.

Very similar here in recent weeks. I'm ~14 months into the body wide twitching. I talk a lot at work and I noticed last week that my tongue, cheeks, jaw, and gums felt very sore and tired. Even so far that my teeth would feel numb. I felt I was having trouble saying words that end in "rs" like hours, yours, etc. I would practice saying those words over and over and my tongue would get so tired and sore. The sides of my tongue literally felt on fire with the way they were rubbing against my teeth saying those words repeatedly. I have the strength to enunciate those words very clearly if I speak slowly. But, in a rushed sentence it doesn't sound the same to me. I've asked others, including my wife, but she says she can't hear a difference.

I'm assuming what's related to all this (for me) is that I've been dealing with raging allergies at the same time. Ridiculous nasal drip, plugged sinuses, sore throat. Never hit me so hard in my life. I know speech can sound different when you are battling a cold, flu, allergies. Plus I just think I'm paranoid. I hear or feel one little difference and I go overboard with strength tests. If I were to get down and do 30 pushups, yea sure... the next 10 would be pretty darn hard.

Bottom line, I'm clear with all my sentences and I don't sound like I'm drunk. Zero problems swallowing and I can press my tongue around all areas of my mouth just as hard as before. I can suck through a straw (thick protein shakes through very small straws). I can click my tongue. Things are best for me in the morning when I haven't been flexing my tongue all day talking. Seems like the tongue is just working like my hands. They feel weak, but I can type, grab, and lift just like I've always been able to. Tongue feels week, but I can speak just like I always used to... just might need to slow down a bit for some words to prove to myself I can say it the same way. I was doing a test with the word worldly that you noted earlier. I can say that fine. Just can't focus on it...